Spondylitis Association of America Forums General Discussion Men Only Message Board Anybody get embarassed?

Second post here, just found the forum today and it's great to see/read others have similar experiences. I've been diagnosed since 1988. When I was diagnosed years ago, I had a lot of pain and swelling in my lower back and neck. I've gotten somewhat worse over the years and gotten stiffer as time has gone on.

Yes, I've tried to exercise and I've taken a number of NSAIDS but finally settled on Celebrex (seems to help the most).

Again, I get REALLY self concious about my neck being so stiff and get really embarrassed when people ask me about it. Not sure why that is but I do. Fortunately, most people are polite enough not to ask but it does come up from time to time and to this day, I still get extremely embarrassed about it.

Have you guys ever felt that way? Am I being hyper sensitive? Should I just get over it?

I don't know if I would say if I was embarrassed, but maybe more self-conscious. I was really having problems with stiffness until my doc put me on Sulfazine and Sulindac. They really helped me out. I think that part of having AS is just getting use to people talking. The worst thing that I've had said is that I was faking. I have my family, close friends and this board to help me deal with everything. So don't let it get you down we are all in this together. Bobby

Sure, I felt that way. It's a completely natural reaction.

I used to be very self-conscious, but after awhile, that faded.
I came to a realization that it was pointless to worry about the part of my appearance over which I had no control.

Plus, the truth is, most people aren't being polite, it's much more likely that they are just unaware. Most people are so caught up with what's going on in their own lives, that they don't notice a lot of the details of anyone else's life unless there is some kind of figurative neon sign attached to it, pointing out to them what seems blatantly obvious to you.

I used to apologize to people for my neck being fused, until sooo many people gave me that puzzled look that says, they hadn't even bothered to notice. Now I only explain when someone asks or comments on it.



Spenser23

i get embarassed all the time. it is pretty hard for me to bend over most days. a few of my friends know whats going on so when i drop stuff or they see me bending over they get what it is i am reaching for. but, i few of the other not in my circle just call me a lazy ass or fat ass when i ask them to help me.

My neck is not fused yet, but I have to "pop" it quite often or it freezes up. When I do that it makes a sound that freaks people out. Whatever. You just learn to cope. Everyone's body goes downhill eventually. I am just glad for all the problems I don't have.

Picking up on what Mark said about how everybody's body goes downhill eventually ... I look at it this way. We are pioneers for our age group, exploring the future.

By the time the rest of our generation starts dealing with the symptoms of old age, we'll have been dealing with it for 30 years or more, and will be able to show all of them how it's done.



Spenser23

Spenser, for you the cup is definitely always half full. (Or is that half empty?? I guess it is depending on what cup you have to drink!)

I've been saying for a while that I'm going to join the circus as a side show entitles "World's Youngest Old Man".

Yeah, I don't know if its embarrassing, or I'm just self conscious, but I am uncomfortable when asked about my stiff neck. I usually just shrug, and say "yep, I have a stiff neck". I think I'll continue to do that for people I don't know, and for those that do, I'll tell them I have a form of arthritis and leave it at that. My neck stiffness is a real problem in business meetings. I try to pick a seat that allows me to limit my neck motion so its not as noticeable.

Yes, I understand. I used to call it 'scoping out the room'; figuring out where to sit so I could have the best view while downplaying my limited neck movement. Fortunately, for the last 21 years, I've worked at a job that doesn't require business meetings.


Spenser23

I have very little movement in my neck. People often say, "look at that, over there!", and I have turn my entire body around to see it. I don't normally get embarrassed when people ask if I slept funny last night?, or if I hurt my back? I just explain to them what I have and how it affects me and they are usually the ones embarrassed!

The only time I get embarrassed, is when I see a picture of myself and realize how slumped over I am. Normally, I don't give it much thought. Just vanity, I guess.

The one area the fused neck really helps me, is actually my peripheral vision. When my kids are doing something off to the side, I can tell what their doing and tell them to stop. People always say, "you really do have eyes in the back of your head!"

I'm not too self-conscious about pain or gimping around. Many of my associated issues ARE pretty embarrassing, though. Chronic sinusitis/PND has been a huge one, particularly when coupled with my misbehaving gut.

Basically, the procedure goes post-nasal drip, cough, hawk, cough, oops, time to go throw up again. Gets worse with any sort of stress, so of course getting self-conscious about it in turn makes it worse.

Awesome stuff for first dates.

Don't have so many second dates. *laugh* I've gotten pretty neurotic about my sinus-related hearing loss, too. Can see people getting irritated as I'm trying like hell to decipher what they're saying.

Hey guys!! You know i was a little embarrased when i first got my cane to gimp on, but it quickly passed cause my cane i knew was going to be my second best friend. My true embarrasment came from my best friend of all times. My Wife!! I went to try and initiate sex and her response was, "No Honey I dont think your capable, I dont want you to break on me or something." I dont know if thats more embarrasing, and just completely mean, but that gave me a really good complex for a long time. I feel bad for anyone whom has had any embarassment. Sorry im so dislexic that my spelling really stinks LOL Im more embarrased about that than my AS. LOL Well until the wifey pulls another slick moment. LOL Take care guys!!

ooops. . .I ment to say,. . I dont know if thats more so embarrasing or just completely mean. Sorry for the typo in the above sentance.

I understand!!! I'm a very proud and independent person and honestly I get embarrassed when i have to ask for help, especially in public. I tend to only go places when I know I'm having a really good day and all of my extremities are working (so that way I won't have to move my neck or shoulders constantly, drop something, or fall). On days that I don't have a choice I try to only go when my husband is home so that way if i need something he can help me and I don't have to ask people for help and then explain why i need the help.

I don't like feeling crippled or like and invalid, but so many times I do and those are the moments when I look up to the evens and just want to scream "WHY?!?!?!?!?", but I have faith and my faith tells me that it's because I'm supposed to be here to show other people that no matter what your obstacles you can make your life whatever you want it to be (or at least that's what I tell myself and somehow that seems to make it better, LOL)!

Hang in there!!! This is a long road but we'll all get through it! Baby steps, just take baby steps.

Yea, baby steps, just like the movie called, What About Bob. Baby Steps:) I like that. Thank for the reminder armywife!! Take care!!

Embarassed? No, at least not as much as when I go to the Urologist and he pops his gloves on and then puts on KY.
We all can get embaressed and annoyed at times. I get through tough times better with humour than I do with anger.

My friends know whats up with my back, but some people do ask about it. I don't mind usually. My neck is fused and my shoulders are hunched a bit, not Quasimoto like but a bit :-)

I find it interesting that I've had a few people that are also afflicted with AS ask me if I had it and then I notice that they did too. Later on I started noticing people that also had it just by the way they moved and turned. THEN I ask them if they have it and they are surprised I knew about it until they noticed I had it too. It could be worse I guess.

I get embarrassed alot! So much so that I will forgo the pain and try to do things even though they hurt. I have a cane, but I refuse to use it. I am only 29, I should not need a cane! Does anyone have a handicap parking permit? I do not want to take that step either, even if it means waking a mile through a parking lot! I get embarrassed when my wife tells me I cannot do something because I will hurt myself or when she gets angry with me because I cannot perform during sex because of the pain. I get embarrassed when I see the other dads at basketball practice playing with their sons and I am sitting on the sidelines just watching.

I get it all the time from guy's.."Man..What's the matter with your neck?" I tell them that I finally got some of those Viagra pills from the doc..and I was so excited i just popped a couple and chewed them...then i tell them let that be a lesson to you !!! Alway's take them with water !!!! Look what happened to me...That was 2 years ago !!! By the time they get done laughing they forget about my neck........Gotta keep a sense of humor about this stuff guy's. And remember this !!!!!

'The will of GOD will never take you where the Grace of GOD will not protect you. '

That's a funny bit, BOBO!

I agree. A sense of humor is essential.

Thanks for the laugh!


Spenser23